I have been a nurse for 26 years and was diagnosed with Pancreatic Neuroendocrine Tumor in December of 2010. I had been getting progressively sicker over a period of years, with bizarre symptoms, flushing, rash that would lead to anaphylaxis. I was down to 85 pounds and nearly died. I had surgery at MD Anderson Cancer center in February of 2011. I was told NOTHING about my tumor, a PNET and the surgeon literally told me that “if your cancer comes back, we take it out”. No other info. 5 years later, after being told by a local oncologist I didn’t need any follow up, I was diagnosed with metastatic disease to my liver and had surgery to remove one lobe. Again I was told nothing about my type of cancer, and was told by an Oncologist the I was “way overreacting” to my new diagnosis when I was crying and upset. Again, I was told nothing about my cancer, and continued to fight these episodes of flushing, rash and fighting off anaphylaxis. My Dr ignored all of my symptoms, and did no further testing. Finally, a family friend who is a radiologist told me that my cancer was rare, and two weeeks ago I googled NETS and found a support site. I was finding information everywhere and literally stayed up the entire night on the internet researching my disease. I found Maryann’s name mentioned several times in patient forums, and everyone said to call her. I reached out to Maryann yesterday (July 13th) through Facebook. She said to call her the next day (today). I can honestly say, through the years rolling down my face, that this woman, a NET patient herself who has devoted her life to this disease is saving my life. At 2:30 in the morning, having no knowledge of any NET specialists in New Mexico, she had a name of a Dr who specializes in this disease, the information that the scan I have needed for years just started here, and I called and had an appointment with this new NET specialist, Dr, Heloisa Soares at UNM cancer center (where I had surgery for metastatic disease in 2016) in one week. I have been suffering with undiagnosed symptoms for years, and in a few hours I was on my way to finally getting the treatment I have needed for years. Maryann and her dedication to this rare cancer is saving my life. I was so sick and so tired of fighting this unknown disease for so many years that last year I was going to take my life. I am grateful that because of my two children I did not. I will dedicate the rest of my life to spreading the word about this cancer and helping and advocating in any way I can any other person diagnosed with this disease. I will be forever indebted to this organization and it’s founder for giving me expert Information and the relief that I have will finally have the knowledge and treatment I need. I say a heartfelt thank you to Maryann and all the people involved in this great organization. I only wish I had found them years ago.
Without the Neuroendocrine Cancer Awareness Network,
I would never have found the help I needed. Being treated by a specialist is an absolute must with our cancer.
MaryAnn had the resources that lead me to Dr. Anthony at the University of Kentucky. Now all I have it one tiny tumor left and it’s trapped in old scar tissue from treatment in the past that wasn’t what I needed. If you don’t see a specialist, you can’t get the proper care.
Thank goodness for Neuroendocrine Cancer Awareness Network.
My wife has Neuroendocrine Cancer and while searching for information on her cancer she became involved with Neuroendocrine Cancer Awareness Network. She began to discuss lab tests, scans and other tests for patients which were not available in our area. She discussed different treatments and wondered if they could help her cope and feel better. Truthfully, I listened but privately didn't know what to expect.
In the fall of 2014, we attended a National Conference hosted by NCAN. At the conference, as we met other patients and caregivers, I watched my wife come back to life. I realized we both needed this outlet for education and support.
We have continued to be involved with NCAN and attend as many functions as possible. We participate in a monthly NCAN support meeting for our in state patients. Several caregivers attend the meetings and we are able to share within the group or privately. Everyone encourages the other members, celebrating the good times and supporting each othef during the bad days.
I look forwarc to the conferences and educational seminars where we attend the educational sessions, make new friends and reunite with old friends. NCAN is very beneficial to NET patients and plays a vital role in the life of the patient and their caregiver.
There are no words to adequately express my gratitude and appreciation for Neuroendocrine Cancer Awareness Network (NCAN) and for everything they do to bring awareness, hope and education to the NET cancer community. Under the tutelage of Maryann and Bob Wahman NCAN has touched and impacted the lives of NET Cancer patients in ways that far exceeds other organizations.
NCAN, makes every effort to educate and encourage NET Cancer patients and their families. Upon contacting NCAN the patient or caregiver receives a ' NCAN New Patient Package' which helps the patient to better understand NET Cancer and how to navigate the NET Cancer journey. NCAN provides hope where there was none.
NCAN hosts National Conferences and Regional Seminars in which acclaimed NET Cancer Specialists present topics on treatments, surgeries and nutrition. During these events the patients have the opportunity to ask questions and often receive valuable information to share with their local doctors. Also, the patients have the opportunity to meet other NET Cancer patients and create strong friendships. This may be the only time a NET Cancer patient meets a fellow patient.
NCAN, keeps the costs associated with attending the events to a minimum. Neuroendocrine Cancer is an expensive cancer to treat and many patients have lost or given up their jobs as they are too sick and fatigued to work. In addition, NCAN posts many presentations on-line in order that as many patients as possible have ever access to the material.
Many NET Cancer patients are told, 'NET Cancer is the best cancer to have.' I can't agree with that statement but I irrevocably state that 'NCAN is the best Nonprofit group for NET Cancer.
I am approaching my 4 year anniversary of my Carcinoid/NET surgery and I am thankful everyday for the people who have offered me encouragement, shared knowledge, and helped educate me about this devastating form of cancer. Carcinoid Cancer Awareness Network is at the top of my list of people/groups to thank. May 14, 2011, I was in the emergency room with a blockage in my small intestine which required surgery. I was shocked to learn the blockage was caused by a malignant carcinoid tumor but was assured the Doctor removed all the tumor and I would be fine. After all," this is a slow growing tumor, it is the best type of cancer to have and I would feel better than I had in years".
I went home and kept waiting to feel better, I waited for one and half years and I was not improving, if anything I was experiencing more problems. I started searching for information and came across Carcinoid Cancer Awareness Network and I contacted them immediately.
I can not begin to express what a difference that phone call made in my search for answers. CCAN talked with me, not at me, and provided information about Carcinoid/NET, helped connect me to support groups and mailed me an informative packet.
This past September I attended a Carcinoid/NET Conference sponsored by CCAN and was in the company of other patients and the top Doctors who specialize in Carcinoid/NET cancer. I was amazed at the low cost to attend this conference, how organized it was and how much I learned. It was very clear the speakers were dedicated to making a difference in the quality of life and life span of patients.
CCAN is available to us every day and offers a warm voice and caring person to answer our questions, help soothe our nerves and point us in the right direction. I cannot say enough about what a wonderful source CCAN is for people living with a rare type of cancer where there is little awareness.
NCAN has helped my family and many others! They are vital in our cancer community.
Maryann and Bob have changed this cancer. It was once so rare that no one even knew where to start to get help. Because of their consistent effort, hard work and passion for awareness, doctors and patients alike have a place to turn for help and guidance. Thankful for them daily!
NCAN is a true patient advocacy group that is comprised of all volunteers, many of who have this rare form of cancer. The founder of the group is a patient who has taken up the cause to brings awareness of the disease not only to the patients but to the medical field. Because of their efforts there are now more doctors and pharmaceutical firms are focusing on the disease.
Ncan has been a great support group for our family . The information ,knowledge and understanding these members and leaders have helped us so much . Being able to find someone knowing what your going through and sharing experiences is such a blessing . Thank NCAN for all your hard work and research.
Nine months after my Neuroendocrine Cancer diagnosis, I attended my first NCAN regional conference. That day was a defining moment in my new life as a cancer patient. The presentations and the professionals were exceptional, but it was the experience of meeting others who shared my rare diagnosis that allowed me to believe in my future again. Bob and Maryann have devoted more than a decade of their lives to bringing awareness of Neuroendocrine Cancer to a very poorly acknowledged group of cancer patients. Their efforts to educate medical professionals and patients are a direct link to the high quality of care I now receive. I am eagerly anticipating my third NCAN conference in September 2019.
Thank you, Anne Dabbs
NCAN provided valuable information to my mom and I to help guide us to the right specialist. They have provided support, encouragement and a sense of unity that I can not begin to explain. I am forever grateful to NCAN.
When my world of cancer became dark and dreary NCAN was a blessing in my sea of suffering. They were like a guiding lantern lighting up my life and saving me from additional strife.
I feel so grateful for all that NCAN has done for me since DX just two years ago. I have been able to attend two NCAN conference meetings, where I learned first-hand about my rare disease. I have met doctors, patients and advocates who provided so much insight. My anxiety level continues to decrease and I fee fortunate to have such an invaluable network I can depend on. Thank you Maryann and Bob for being there when I needed this resource so desperately! - Kathleen
I was diagnosed with a PNET 12/2017. I have never heard of Neuroendocrine Cancer prior to this. I get online and start to Google, I came across NCAN's website and requested a patient pack be sent to me. It was so informative and I quickly learned a lot of information. I then spoke to Maryann a few times with questions. In March of this year I got to meet Maryann & Bob along with the rest of the NCAN leaders and I have to say it was the best feeling I have had in a long time. Everyone is so wonderful and the support they have for patients and caregivers is above and beyond. I am so happy that I found another family and great support system.
When I was initially diagnosed in 2012, and subsequently had my Whipple, Mary Ann was very positive, and encouraging. I have called on her a few times and she had been able to answer the question I had or refer me to someone that could. Thank you Mary Ann.
Is this what you were speaking of Maryann? I thank you for and appreciated the Initial Packet, and being there to "talk" and offer help. I tried to post a photo and it won't let me.
I was just recently diagnosed with this cancer and would love to know who to speak to about it. I can’t find any info on th web about this. Who do you talk to to get a the information you have? I’m 33 years old and want to have a better understanding of my cancer. Neuroendocrine cervical carcinoma. I was told it’s rare and they want to treat it like lung cancer. Still trying to figure out how to reach out to people here to talk and get info. Help please:)
I live in Nashville TN. Not sure why it says NC
I have only recently been diagnosed with NET (3 weeks ago) and thus far NCAN has been more helpful to me as a resource than my own oncologist. I have already received information on background of the cancer, labs to request, doctors to seek out, nutritional information, support groups, etc. Due to the rare nature of this type of cancer, there are so few solid resources unless you live in/near a big city. NCAN provided a tremendous amount of information that even Google searches would not have uncovered. NCAN is an invaluable resource. I couldn't recommend it more highly.
Words cannot express my deep love and gratitude for NCAN. They care immensely for the community, make it their priority to help others in all ways possible, put on amazingly educating conferences that change people’s lives and so much more. Being a part of these conferences have been vital in keeping my husband alive and well. We are so fortunate to now be a part of it as well as have gained so much from all they do for the NET community. I am in awe and inspired daily by them!
As a patient and a support group leader, I am blessed to have our group as a member of NCAN. Before I learned about NCAN I had a local independent support group that fell apart when I had personal health issues. With the help and support of NCAN we now have a local group that will be sustainable because of the invaluable information, training and support we receive.
I had the opportunity to attend NCAN's Chapter Leadership Training last week (04/13 - 04/15). It was an outstanding meeting in which I learned so much about the structure of a successful meeting. Most importantly, I gathered important leadership skills which I will utilize within our local group.
The agenda was well presented and followed by the speakers, presenters, patients and caegivers. The facilitator, Rick, kept the meeting running smoothly and adhered to the allotted time frame for each segment with breaks for meals. The sessions began and ended on schedule which requires skill when people are asking questions and sharing input. Rick managed to include everyone and each participant had the opportunity to be involved.
The presenters were very well prepared and knowledgeable in their area of expertise. As a patient, I am thirsty for information about Neuroendrocrine Cancer, a complex disease which is hard to detect, and treat. It is wonderful people, such as the speakers and presenters who participated in the meeting, that keep us informed and encouraged.
The meeting crystallized the importance NCAN plays in so many patients well being. Maryann and Bob Wahmann, the staff and volunteers are relentless in their passion to bring awareness to NET Cancer and to assist patients and caregivers on their NET journey.
The knowledge and skills I garnered at the meeting will be utilized to conduct our local chapter of NCAN support program and meetings in an empathic, knowledgeable and proffessional manner. The knowledge will be utilized to better meet each members needs and identify ways we can be of service.
Thank you to everyone that helped in making the meeting a success.
A special thanks to; Maryann, Bob, Patrice, Rick, Dr. WANG, Leigh Ann, presenters and all sponsors.
TN Chapter (NCAN)
First time attending the NCAN conference. This is for chapter leaders. I have learned so much about myself, other people facing this cancer. Knowledge, tools, friendships. Amazing. Thank you Maryann, Bob, Patrice and Rick for taking me under your wing and tackle this cancer with awareness and love. Incredible Dr. Wang as well. He is a hero. Thank you again. Danielle
I attended the national patient conference 2 years ago when looking for answers and direction with a lack of such anywhere else. The information presented was invaluable and has led me in pursuit of not only obtaining the best care I can get for myself, but the ability to extend to others I come in contact with who may be looking for the same. Mad love and admiration for the founders and those involved in this foundation!
In April 2013 I had exploratory surgery and diagnosed with stage 4 Neuroendocrine Cancer with primary small bowel and multiple mets. I was told if I had" to have cancer this was the best to have". I started searching for information ( being a nurse for 39 years I needed to educate myself). I came across the NCAN website. This website was so informative, educational and had lists of NET specialist. I did attend a National Conference and plan to go again in September. I give many thanks to NCAN for this opportunity to continue to be educated. So important for Zebras in fighting this cancer! The staff has always been helpful and kind to me.
Professionalism at it’s finest. Maryann, Bob and the rest of the board are always thinking of the patients first and how they can make Neuroendocrine Cancer better known in the medical community as well as the public. What a great cause!
NCAN has been a lifesaver for me by educating me about my rare cancer and its treatments. Cancer is scary enough but I feel empowered by the knowledge that I have gained to have an informed conversation with the many doctors who treat me and the new treatments they offer. I am amazed at the high quality programs that they offer to patients, caregivers, and healthcare providers with minimal costs to participate. I am also deeply thankful for the many friends I have met through NCAN.
I learned about CCAN after having surgery for a pulmonary carcinoid and have found them to be of enormous help in understanding the nature of my disease.
- Upon my first contact, I was greeted warmly and had many questions answered, including contacts of people willing to speak to me about their experience with this rare disease. I also received a large package with all types of information.
-Meetings are well focused and very informative.
-CCAN hosts a variety of conferences and other events that bring the top physicians in the field to educate patients and support people on the latest developments and answer questions.
- The management team at CCAN is very dynamic and is a major force in raising awareness about this rare disease at all levels.
Thank you for the wonderful review! See you in August for the conference. Stay well.
The folks at the Neuroendocrine Network are always very helpful. They provide much needed information and counseling on this rare disease. The conferences are invaluable for patients and caregivers.
My mom was a Zebra (carcinoid patient) this organization has helped us empower ourselves to reach out and find the best possible treatment options and has provided support second to none. I hate to think where we would be with out the amazing conferences they organize. Thank you!
After over 7 years of struggling with this dreadful disease and exhaustive searches for the right medical care NCAN came to the rescue. I attended one of their sponsored presentations in another state and within weeks found the best medical team I’ve ever encountered. I now have the care I need, that I can afford and a game plan for my future. I am no longer battling this disease alone. Forever indebted to this organization and the tireless, caring people who run it.
NCAN is an awesome nonprofit organization! The Neuroendocrine Cancer community doesnt receive funds from the American Cancer Society as the more common cancers do. So, it's phenomenal that NCAN spreads awareness for the medical community, patients, and caregivers through fundraisers, conventions, etc. Thank you Mary Ann and Bob for all that you do.
I was dx with stage 4 Neuroendocrine Cancer Jan. 2013. Having a long family history of cancer (none Net) I felt lost and hopeless. I had never heard of Neuroendocrine and frantically searched the internet. I stumbled across NCAN & reached out to Maryann who sent me a package full of helpful information. I sincerely thank NCAN & Maryann for giving hope to the hopeless!
Hi Maryann, I'm a nurse who works in adult oncology. I had a patient last night who found his way to us and a very important surgery because of you. I wanted to thank you for what you do and for the ginormous amount of hope and happiness you have brought to this man and his family's life. He was crying tears of joy for the way you changed the path of his life.
Thank you for what you do
The NCAN provides a very unique support for the many patients with neuroendocrine tumors (NETs). When diagnosed with a rare tumor such as a NET, good and unbiased information is hard to find. NCAN organizes outstanding patient-oriented conferences of excellent quality.
Top notch organization. NCAN has helped my family when my Mom was diagnosed back in 2007. We attended many of the conferences and received invaluable information from them. We took advantage of the hotline when we had questions and always knew we had a understanding and concerned voice on the other end. Thanks Maryann and Bob for all you do for the entire NET community. You are very much needed and appreciated.
Wonderful information that was informative. Education for Neuroendocrine Cancer that is so much needed. I received my free packet in a very timely manner and refer to it often. Cannot thank this awareness network enough!
I was first introduced to this organization by my BF who was diagnosed with this form of cancer. Despite being a health care professional I had never heard of this cancer nor its prognosis. I read the educational material and became involved with some of the websites and Facebook pages dedicated to this disease. I was very impressed with the sharing of medical providers treating this condition as well as the ability of members to openly share their disease process and ask others with this disease what treatment options they had experienced as well as what worked for them and what did not. My BF was very active in this community and well known by many for her educational push to learn more about this disease and share her education with fellow members. She attended the national conferences and was a spokesperson for this organization involving as many people as possible about Neuroedocrine Carcer Awareness. The disease took her last summer but through this network she left many to carry on where she left off.
I was diagnosed with a lung carcinoid in 2014 from an incidental lung x-ray for another surgery. While recovering I was searching for support & found NCAN. I am very grateful to Maryann & Bob Wahman for starting this organization. I was able to learn more about this disease as well as meet alot of wonderful people.
It is an honor to be able to work with and support Neuroendocrine Cancer Awareness Network (NCAN) founder and Executive Director Maryann and Bob Wahmann in their outreach efforts to the NET cancer community. Since Maryann’s diagnosis in 2001, the Wahmanns have devoted their lives to supporting thousands of patients in this rare disease community, annually hosting four regional patient education conferences and holding a national conference biennially. They are constantly striving to expand the information channels they use to reach patients throughout the country—making printed materials available to the 15-plus local patient support groups across the country, holding regular leadership training programs for local leaders, hosting an active online presence through their website and blog – with several thousand visitors monthly – and being available 9 AM to 9 PM 7 days a week for calls which come in from patients around the world. Our experience in working with NCAN can be summarized in a quote by famed anthropologist and humanist Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”